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A guide to coping & recovery: for parents, carers and family members of young people who hear voices or see visions

VOICECOLLECTIVEin Camden

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AboutThis booklet has been put together by Mind in Camden’s London-wide Voice Collective project. Voice Collective works with children, young people, families and youth agencies across Greater London to help improve the support available to young people who hear voices, see visions or have other unusual experiences.

The information in this booklet has been created by project staff, some of whom have personal experience of living with voices and visions. Whilst developing the booklet we were also guided by parents and carers, and have used some of their quotes throughout.

If you, or someone you know, would like to find out more about our services, please contact:

Voice Collective Mind in Camden, Barnes House, 9-15 Camden Road

London, NW6 3SG

T: 020 7911 0822

E: info@voicecollective.co.uk, W: www.voicecollective.co.uk

Twitter: www.twitter.com/voicecollectiveFacebook: www.facebook.com/voicecollective

Tumblr: www.voicecollective.tumblr.com

With thanks to:Funders: Front Page Reference Image:BBC Children In Need MunkiichyanJohn Lyon’s Charity (http://fav.me/d21lock)

*The information in this booklet is not a substitute for professional advice. If you are concerned about your child - please speak to your GP.

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introduction

Dealing with a child who hears voices is like going through a process in which the voices are accepted and the child will be supported based on the acceptance. It is a ‘searching together’

Dr Sandra Escher, Children Hearing Voices (p1)

Whilst the majority of children who hear voices aren’t negatively affected by them, this may be little comfort if your child is struggling to cope. When voices and visions are very intrusive, powerful or distressing, it is normal for the whole family to feel overwhelmed and powerless. As a parent, you may feel that your child is struggling with something that is simply beyond your understanding.

The good news is that research shows recovery is possible, and you as a parent have a really important role to play. You can support your child to discover their potential for growth and recovery, providing essential hope and encouragement.

If your child is currently having very distressing experiences, this may feel like a distant dream. You may feel lost and not know what to do for the best. It can help to see recovery as a journey. Every journey, no matter how difficult, starts with a single step.

Each of us is an individual, so there is no simple answer that works for everyone. However, we hope that the information in this booklet will give you some inspiration to find a way forward for you and your child.

Finally, remember that journeys do not need to be taken alone. There are people out there who can help. If you’re not sure how to access them, speak to your GP, Young Minds or contact us at Voice Collective.

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recovery

If life was easy, none of us would need to recover. We’d simply hear voices that made us laugh or smile. Recovery is more than just finding ways of dealing with voices. It’s about healing from the problems that caused such difficult experiences in the first place.

Rachel, Voice Collective Project Manager and voice-hearer

what do we mean by recovery?

For us, recovery simply means living the life you choose.

Whilst many young people who hear voices aren’t distressed by them, overwhelming voices can really get in the way of ‘normal’ life. They can affect a young person’s sense of self, confidence, self-esteem, mood, friendships, schoolwork and family relationships. Sometimes the situation can feel hopeless to both the young person and those who love them - as if everyone is powerless and stuck in a situation out of their control.

The good news is that even those young people affected by intensely confusing and distressing voices can, and do, recover. Recovery is an individual journey. As with all journeys, there are many ways that we can travel towards it. Our job, as supporters, is to help a young person find the way that works for them.

Young people who recover may, or may not, still hear voices and see visions. In many ways, this isn’t important. The key is that they are living their life - a life with highs, lows, challenges, joy, mistakes and victories. When someone has recovered, the voices are no longer in the driving seat. Perhaps most importantly, the life problems triggering the voices have been understood and dealt with.

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what happens with the voices?

According to Dr Escher’s research, 60% of children and young people stop hearing voices once the problems underlying them have been addressed.

If your child’s voices are very distressing, the idea that they may continue to hear voices and recover can sound strange. After all, how could anyone feel good if they hear voices that say horrible things and tell them to stay away from people they care about?

One way of understanding this is by thinking about people in your own life that you have found hard to cope with. Whilst, in an ideal world, we would stop having contact with people we find toxic - sometimes this isn’t possible. If they are work colleagues, extended family members or a best friend’s partner, we are stuck with them whether we like it or not. In this situation, as we can’t change or escape the other person, the only thing we can do is change ourselves. Sometimes this just limits their influence over us, but it can also produce a similar change in the other person.

Your child’s relationship with their voices can be understood in a similar way. Recovery can happen when:

) The voices stay the same, but the young person changes how they feel about them. For example, imagine a child who is about to take a test and a voice tells them that they’re stupid and will fail. If this child knows that the voice says things when they’re nervous, they can reply: ‘I’m worried about failing, but I’ve studied so I’m going to do my best. Even if I do fail, I can always re-take it. I’ll be OK either way’.

) The voices change. For example, a nasty voice that that tells them to stay away from other people can sometimes be a protector voice in disguise. When the child no longer fears other people the voice may, instead, become friendly and supportive.

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steps to recovery

‘Always be there for your child, however tough it becomes. You are the one they most rely on and trust. Follow your instincts and remember you know your child better than anyone else’

Anne*, Parent of a child supported by Voice Collective

Voices and visions carry important messages about how your child feels about themselves and their world. Rather than speaking directly, these messages are hidden in code. Difficult and distressing voices often reflect difficult and distressing emotions and life experiences.

Young people can, and do, find ways of coping with voices, visions and the emotions that drive them. Developing these strategies will give your child valuable skills that will help them get the most out of their life, whether or not they continue to hear voices.

1. What’s the problem?

One of the first steps to helping your child find ways of dealing with problematic voices and visions is to begin making sense of what difficulties or issues may be triggering them. Different problems suggest different solutions. Sometimes, the underlying issue may be obvious. You may be aware that your child has been bullied, recently bereaved or witnessed a serious crime. Often, though, things need closer investigation.

Try to be aware of, and avoid, the blame game. Unless you intentionally caused your child harm, you are not to blame for their experiences. However, as well as looking at outside factors, it can be helpful to explore whether there is anything within the home that may be inadvertently contributing to your child’s difficult emotions (e.g. a loss or recent change).

7When your child is feeling calm, encourage them to talk to you about how they feel and - if they can - what the voices are saying. Some may find it easier to talk whilst writing, drawing or doing something active.

When talking to your child it is important to stay calm and show that you’re interested in seeing things from their point of view. Some families find setting up a ‘worry box’ helpful to facilitate this. This gives the child the opportunity to write worries down as they occur and, if they want to, explore them later with someone they trust.

Voices and visions are often linked to how the child feels about themselves and their world, providing valuable clues about the issues they are facing. For example, a child who hears voices that tells them to repeat a task until they get it right may be feeling very anxious and insecure. A child whose voices shout at them may be feeling angry at themselves or at someone else.

We found out that Sam is being bullied at school. His voices shout at him, threaten him and say al l kinds of horrible things. He carries the bul l ies inside, now. I hate knowing he feels so bad, but at least now we can help

Jane*, Parent of a child supported by Voice Collective

If your child hears very angry or destructive voices, they probably feel very afraid and powerless. As horrible as these voices can be, don’t forget that they carry meaning too. Try not to be afraid of the voices, even if your child is very scared. Once your child is calm, you can start to make sense of what’s going on for them, but your immediate priority is to help them find a way of calming down and feeling safe again.

Remember: you don’t need to do this alone. There are lots of agencies out there who are willing and able to help.

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2. Identify, and build on, strengths

Everyone, no matter how stressed out, has natural ways of managing difficult feelings or situations. If you can find out what strategies your child naturally uses, you may be surprised at how resourceful they are! Create a list with your child and encourage them to keep it safe.

If you can, look for the secret ingredient of each strategy - try to understand what it is that makes it useful. Is it distracting? Comforting? Creative? Expressive? Active? Calming? The more you understand, the easier it will be to create tailor-made strategies with your child that really work!

Often, when young people feel overwhelmed, they can struggle to think of anything they can do to manage difficult times. Discussing coping strategies can remind them of how hopeless their situation feels. You can help by ‘holding the hope’ and remembering that they can - and will - discover ways of dealing with this. Developing new skills takes time, support and lots of encouragement.

3. Work together to find a solution

A major part of your child’s journey to recovery is finding their own coping strategies. It can be helpful to think of it building up a toolbox that will help your child deal with a range of situations and feelings.

Everyone is different, so there is no magic formula. However, you can help engage your child in this creative process. Remember to trust your instincts and listen to your child - you are the experts, after all!

‘Never doubt your judgement or be afraid to ask for advice, support and help’

Dee*, Parent of a child supported by Voice Collective

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some coping strategiesThese are just a few ideas that young people we work with have found helpful. Use them as a starting point, for inspiration, and not as an instruction manual. See www.voicecollective.co.uk for more ideas.

Calming * * *

Often, voices and visions are triggered or made worse by feelings of stress and anxiety. They may get louder, nastier or more distracting the more stressed your child gets. Even if the voices are triggered by something else, hearing them may make your child feel scared or frightened.

These tips can be handy if your child needs to calm down and relax. They are a good place to start, and they are tips for life - not just for voices. Your child may need help remembering them in difficult moments. In our experience, it can really help to talk someone through these exercises - this is where your help is invaluable.

Find a calming ritualA ritual, in this sense, is just something familiar that your child can do when they need to feel safe. It could be anything from making a hot drink, playing scales on a musical instrument, practising tai chi/yoga, bouncing a ball, reading a reassuring poem or story, watching a favourite programme, holding a favourite toy/blanket or saying a prayer. Some young people find safety in patterns - in which case puzzles and doodling may be helpful too.

Your child may find writing their own mantra helpful. This can either contradict the voices, or remind the them of their strength and safety. For example, “I’m safe here. No-one is going to hurt me’ or ‘I am safe, I am strong. I am loved’. It can help to keep this on a card so the child can repeat it when they feel vulnerable.

10Breathing ExercisesSlow, deep breathing is very calming. We get feedback from our body, so if our breathing is relaxed our brain says ‘OK - no threat here’. Conversely, if someone takes quick shallow breaths our brain can get the message that there really is something to worry about.

If you ask someone who is really stressed to breathe deeply, they tend to force it and pant. This only makes them feel more stressed out. Instead, it can help to use a pattern to provide some structure and something to focus on.

As a starting point, tap a steady beat and try this:

Breathe in for 4, hold for 4, breathe out for 4, hold for 4

Repeat the cycle until you feel comfortable with it. Make sure you’re breathing from your belly, not from the top of your lungs. Your belly should expand, but your shoulders should stay still.

Then, when you’re ready, try lengthening the ‘out’ breath whilst keeping the others the same length. Go from 4 to 6 to 8

Remember: Always go at the young person’s pace and aim for gentle breathing rather than anything athletic. It should be as relaxed as possible. If they start to feel dizzy, stop and sit down.

Physical Relaxation ExercisesTalk your child through clenching each part of their body for a few seconds and then releasing it. Encourage them to really pay attention to how their body feels. If your child is too young for this, you can help them by turning this into a game. First, the child needs to curl up like a turtle going into its shell. Then, slowly, ask them to turn into a giraffe stretching to nibble on a tall leaf.

11Five ThingsWhen things are scary, we tend to pay lots of attention to them and find it hard to focus on other things. This is an adaptive response - after all, if we lived in the wild we would need to focus on threats such as lions to stay alive. Grounding exercises can help your child learn to shift their focus from the voices and visions to other sensory information (inside or outside of their body). It can be helpful to do this as a game, alongside your child.

Name 5 things you can see, 5 things you can hear and 5 things you can touch.

Name 4 things .... 3 things .... 2 things ... 1 thing.

It’s ok to repeat things and you can cheat at any time. If your child runs out of sounds, it’s fine for either of you to make a noise.

If they are hearing or seeing things at the time, they can include these too. The trick is to place them alongside the other things they can hear, see or sense to make them less powerful.

Create a Safe HavenHelp your child construct a safe place at home that they can go to when they’re feeling vulnerable. This can be a room, a corner of a room, a soft chair - anywhere which is calming, quiet and easily accessible.

Another version of this is to encourage your child to imagine a safe place and describe it in detail. Ask questions to help them use all of their senses in this, bringing it to life. With your child, choose a small object that they can hold whilst doing this imagining. This could be a pebble, shell, small toy or anything they find reassuring. Repeat this visualisation each day, each time imagining that all the good and safe feelings pass into the object. Then, when they are stressed - encourage them to use the object to help them remember that safe space inside.

12A Good Memories BoxWhen things are tough, it’s hard to keep hold of good memories. Creating a treasure chest can help both of you keep these memories close to heart to use on dark days. Encourage your child to fill it with anything that triggers good memories and feelings - photos, lyrics, objects, artwork, memories, letters, quotes ... anything goes.

Distracting * * *

Distraction is one of the most natural ways of dealing with distressing experiences. It involves your child identifying a range of activities that they can really focus on, even when things are stressful.

This might include: listening to music, playing computer games, going for a walk, sport, cleaning, painting, drawing, creative writing, planning something, reading a magazine, thinking games, singing, watching music TV, making something (e.g. using clay, plasticine or newspaper), being around people or cooking.

A cautionary note: Whilst distraction is a useful temporary strategy, it is just pushing the difficult feelings or experiences away for a bit. Your child will also need help in expressing themselves and finding ways to gain some control over their voices or visions at some point.

Expressing * * *

Difficult voices are often linked to difficult emotions, so it makes sense that expressing them can be helpful.

These emotions can feel very scary to a child or young person, especially if they are linked to the voices they hear. You can play a very important role in helping them to feel - and stay - safe. If they begin to get overwhelmed, remember to use some of the ‘calming strategies’ mentioned earlier in this booklet.

13PhysicalIf your child is feeling frustrated, angry or anxious, doing something physical can help. This might include running, bike riding, walking fast or shadow boxing. It can be helpful to throw a soft ball at a wall, rip up a newspaper or hit a pillow or punch bag. Singing, dancing or playing along to music can be great too.

Everyone needs to shout and scream sometimes. If you can, find a safe way for your child to let off steam (e.g. shouting along to music). You might even want to create your own ‘Haka’ together (a Maori war cry / dance used by the New Zealand rugby team before each game).

CreativeCreativity provides an excellent way for children and young people to express themselves. You could encourage your child to write, draw, paint, or use playdoh to show how they’re feeling. If your child likes to write, keeping a diary can help record how they are feeling so they can make sense of it with someone later. Alternatively, scrap-booking and collages are great ways of keeping track of feelings without the need for words.

TalkingYour child may want to talk to someone about what they’re going through. In this case, you can support your child is by staying calm and providing a listening ear. Try and take what your child says seriously - what they’re going through feels very real to them even if you can’t understand it. If they are struggling, you can also help by finding them a counsellor, therapist, mentor or CAMHS professional to speak with.

‘It helps to be empathic to her experiences, not ignoring or dismissing them. But recognising her fear is real.’

Joe*, Parent of a child supported by Voice Collective

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taking the power back * * *

Voices and visions only have as much power as the child, and their supporters, give them. However, dominant and scary voices can sometimes end up ruling your whole family’s life - with everyone avoiding anything that could possibly make the voices worse. Whilst understandable, this can leave you feeling incredibly isolated. In time, it can feel very challenging - but not impossible - to regain the balance.

Don’t panic!One of the most effective ways of readjusting the power balance is also the most simple. As a parent, the way you react to and speak about the voices is crucial. Try and stay as calm as possible. It helps to show your child that, whilst you recognise how frightened they feel, you are there to support them find a way through it.

Getting support for you and your childRecovery does not happen in a vacuum. If your child is overwhelmed, or you’re struggling to cope, see it as a sign to get some extra help. This support can come from CAMHS (Child and Adolescent Mental Health Services), your GP, charities, Voice Collective, Young Minds, faith groups, community groups or your friends & family. You are not alone.

Listening with kindnessSome young people find it helpful to see difficult voices as bullies. Bullies have often been bullied themselves and, even though they can be nasty, they are often covering up their own vulnerability.

Others find it helpful to treat nasty voices as if they are angry younger children that are having a temper tantrum. In both cases, being kind but firm can strip them of their power and help the young person feel more in control.

15Questioning and challengingVoices don’t always tell the truth, so it can be helpful to support your child to gather evidence to see whether or not the voices they hear can be trusted. This is especially important if the voices make claims, predictions or make your child feel unsafe. Like people, voices can be questioned and challenged. You can set limits with them, as you would with unruly toddlers, and you can postpone or avoid the things they tell you to do.

Sending the voices awayIf your child finds distraction strategies helpful, it shows that there are some times when they can ignore (or at least minimise) the voices they hear. Some young people can build on this to send the voices away for certain periods of time (starting small and building up gradually).

Becoming an interpreter

It can be helpful for young people to see voices as messengers that aren’t very good at communicating in a straightforward way. Their message can get confused, so we need to find ways of making sense of it. If your child is old enough, they may want to work with you as a detective to ‘de-code’ the voices and work out what problem they’re trying to communicate.

a final thoughtFinally, remember all the good things about your child. Are they creative, determined, loving, intelligent, energetic, funny, kind or quirky? Look for their strengths and let them know that you see them in their entirety.

Your child is ‘normal’, even though they have some extraordinary experiences. They will have the regular highs, lows and diversions that you’d expect from any child. They’ll make mistakes unrelated to their voices, and they’ll have successes too. There’s more to your child than their voices - if you can help them to see that, you are doing a great job!

Around 8% of children and young people hear voices or see things that other people don’t. It’s much more common than many people think.

Voice Collective is a Mind in Camden project that works in partnership with youth services across London to help ensure that these children, young people and families get the best support possible.

W: www.voicecollective.co.uk, E: info@voicecollective.co.uk, T: 020 7625 9042

our services

FOR YOUNG PEOPLEIf you hear, see or sense things that others don’t and are 18 or under, we can offer:

• Peer support groups, so you can meet with other young people

• Creative workshops, where you can learn new skills and have some fun

• 1-2-1 support around making sense of voices and finding coping strategies (email, phone and in person)

• Information & signposting, to help you find the right services and support for you

• Online support forum

• Wesbite, including lots of information and ideas to help you understand your experiences and find ways of dealing with them

• Support for your family, school or youth workers

“Without the group I would be isolated. I used to think I was the only person this is happening to, that I was freakish or wrong. It helped me realise that there are other people. It normalised it and made it less inhuman”

- Andy*, Aged 16

FOR parents / carersIf your child hears voices, we can offer:

• Support workshops, so you can meet with other parents, share experiences & get new tips

• 1-2-1 support to help you make sense of your child’s experiences and think of ways of helping them cope (email, phone & in person)

• Information & signposting

• Website & online support forum

FOR workersA large part of our service involves supporting schools, social services, CAMHS & other youth agencies to work with children & young people who have these experiences.

We are f lexible in what we offer, so do get in touch to explore how we might work together.

• Coaching and training for staff to support staff already working with a young person who hears voices

• Awareness raising (including PSHE lessons and workshops for staff)

• Help developing written information, policies and guidance around supporting young people who hear voices

You have brought us ‘normality’ within these experiences. You have taught us that with the appropriate support young people can lead happy and successful lives. You recognise the love we have for our children and have taught us how to support them”

- Sue*, Mother of a 12 year old

Voice Collective is funded by: BBC Children In Need, City Bridge Trust & Comic Relief.